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The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling student at Stanford University. She and her colleagues analyzed the views of parents of persons with trisomy 21, trisomy 18, and trisomy 13 syndromes toward the new gene-editing technologies. The…

I know we might not have known each other long. Maybe you’re a friendly cashier, or someone buying the same grapes as me at the grocery store. Maybe we’re taking turns on a machine at the gym, or we just met at a professional development opportunity. We make friendly banter, which I’m probably not enthused…

The New York Times reports: “Federal civil rights office rejects rationing medical care based on disability or age.” The U.S. Department of Health and Human Services’ civil rights office told medical providers on Saturday that they may not deny medical care to people on the basis of their disabilities or age during the coronavirus emergency.…

How to Support a Parent in Grief Wisdom from Bereaved Parents of Children Diagnosed with a Syndrome “People told us that having him would be the hardest thing we ever did. But they were wrong. The hardest part is not having him.” Patricia Farmer, Joey, Trisomy 13 “If you are lucky enough to have not…

When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…

When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…

A message from Dr. John Carey, SOFT Medical Advisor Greetings to Families and Friends of SOFT, At this unreal time, let me say first that I share with all the intense and widespread concerns and anxiety engendered by COVID-19. Despite working every day at home now, and on occasion at the hospital, the implications of…

To Our SOFT Family: SOFT is an organization that has always and will always put families first. In light of the arrival of COVID-19 in the United States, the Board of Directors convened to discuss appropriate actions that should be taken in order to keep our members, and most importantly our SOFT children, safe. We…

To Our SOFT Family: You likely know by now that the 2020 SOFT Conference will be postponed until July 2021 due to concerns for our health related to the coronavirus. While updates on COVID-19 (coronavirus illness) pandemic are publicized on the TV news regularly and are widely available online, the Medical & Scientific Advisory Board of SOFT considered…

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